Development and validation of the Patient Experience with Treatment and Self-management (PETS): a patient-reported measure of treatment burden Academic Article uri icon

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  • PURPOSE: The purpose of this study was to develop and validate a new comprehensive patient-reported measure of treatment burden-the Patient Experience with Treatment and Self-management (PETS). METHODS: A conceptual framework was used to derive the PETS with items reviewed and cognitively tested with patients. A survey battery, including a pilot version of the PETS, was mailed to 838 multi-morbid patients from two healthcare institutions for validation. RESULTS: A total of 332 multi-morbid patients returned completed surveys. Diagnostics supported deletion and consolidation of some items and domains. Confirmatory factor analysis supported a domain model for scaling comprised of 9 factors: medical information, medications, medical appointments, monitoring health, interpersonal challenges, medical/healthcare expenses, difficulty with healthcare services, role/social activity limitations, and physical/mental exhaustion. Scales showed good internal consistency (α range 0.79-0.95). Higher PETS scores, indicative of greater treatment burden, were correlated with more distress, less satisfaction with medications, lower self-efficacy, worse physical and mental health, and lower convenience of healthcare (Ps < 0.001). Patients with lower health literacy, less adherence to medications, and more financial difficulties reported higher PETS scores (Ps < 0.01). CONCLUSION: A comprehensive patient-reported measure of treatment burden can help to better characterize the impact of treatment and self-management burden on patient well-being and guide care toward minimally disruptive medicine.


  • Eton, David T
  • Yost, Kathleen J
  • Lai, Jin-shei
  • Ridgeway, Jennifer L
  • Egginton, Jason S
  • Rosedahl, Jordan K
  • Linzer, Mark
  • Boehm, Deborah H
  • Thakur, Azra
  • Poplau, Sara
  • Odell, Laura
  • Montori, Victor
  • May, Carl R
  • Anderson, Roger T

publication date

  • February 2017